The Liverpool Care Pathway What have we learned which should guide the future?

1. The Liverpool Care Pathway What have we learned which should guide the future? Clinical issues Health system issues Societal issues Scottish Government

2. I don’t read the Daily Mail….but Deans Buchanan Consultant in palliative care, ninewells hospital

3. Outline The intent The good bits Personal experience of the less good bits What others said Now and onwards

4. Discussions with passion Can be hard to think through, talk through and work through Not everyone thinks/feels the same There is a need to hear all voices within the discussion, consider and then work through

5. Disclaimer Critique of the LCP has often been difficult within palliative care The LCP was not a ‘bad’ tool The domains are good The intent was good Good intentions are not enough

6. The intent • Aimed to introduce the minimum standards for good quality end-of-life care into acute setting • A product of the times – ‘ICP’ • Last ‘72hrs’ when dying was clearly recognised • Not for all patients • To evolve • Version one to version 12 • Generic to specific – renal LCP, ICU LCP and A&E LCP • CELT Tool

7. The good bits • Concepts • For the ‘dying’ • Domains of importance • Structure • Documentation • Clear decision made • Audit intent

8. The less good bits • Unintended consequences • Complex intervention into complex systems • ‘One size fits all’ IF not used thoughtfully • ‘Thoughtlessness’ – perhaps not unusual in busy, pressured environments • Not automated in terms of meds but ‘label’ of ‘on LCP’ could suppress wider thinking/rethinking • 72 hours seemed to be forgotten over time • Initial versions had ‘2 of 4 boxes’ to aid recognising dying – too easily were considered as the way to ‘diagnose’ dying (revised over time)

9. The less good bits Audit of documentation not of outcomes Used in hospices differently from hospitals – i.e. highlights differences in understanding Probably more open to lack of considered use in large institutions versus small institutions/small teams Language of ‘achieved’ versus ‘variable’ drove interventions in one direction Clinical language sometimes changed from ‘this person is dying’ to ‘they fit the LCP criteria’

10. Personal Experience • ‘Dying’ • We teach this can be difficult to recognise • Can be very uncertain in acute setting • Referral for End of Life Care…….again • Palliative label not always helpful when uncertainty a key feature or dual approach needed (Treatment trial) • Hypoglycaemia – ABCDE and ‘DFG’ or ‘DFFG’ • Everton Supporters…….. • One size doesn’t fit all • Can have scenarios where goals of care are better served by not ‘achieving’ eliminating variance • Paper doesn’t always match reality – asked to review re: pain. LCP pain control ‘achieved’

11. Personal Experience Senior and MDT decision-making important but not always present Out of hours – what was the rush? ‘For LCP’ – not a proxy for thoughtful, individualised end of life care Executive teams – LCP implemented/job done Uncertainty issues exaggerated in non-malignant disease

12. What others said • ‘Not individualised’ • Harms documented • 483 written submissions from members of the public • 113 direct meetings with members of the public with experience of LCP as patients or relatives • Context matters • Communication variable • Consent and capacity issues • Money/incentives in NHS England really did not help • Just need more education • Seemed to be healthcare teams doing this ‘to’ people i.e. not ‘with’ or ‘for’ people

13. Is this paradox of position related to: • Questions of mortality are difficult • Autonomy – where does the control lie?

14. What we are saying now • Initial shock and anger from within specialty • Good tool and the press has brought it down • Tools are neutral, it’s how you use them • Education only needed then it’s okay • Rebrand and re-launch • Further consideration • Higher priority for end of life care at executive level • Need to understand the public’s concerns even if reported in unhelpful way • Resources are a big question • Tools are not neutral – design/language and structure leads use and can be open to unintended consequences • What makes sense of public/media reaction against LCP versus public/media support of physician assisted suicide

15. Now and Onwards • Guidance not protocols • Frameworks/Plans not pathways • Learn from others – e.g. ‘birth plans’ • Prompts/triggers/nudges of thoughtful, individualised care • Ensure competence and thoughtfulness is the baseline position • Research integrated into this and ‘outcomes of care’ not just ‘care process achieved’ considered

16. Now and Onwards A once in generation opportunity of making end of life care core business for all settings of healthcare Executive responsibility for outcomes and resourcing provision re: PEOLC Public debate very healthy In medical institutions - medications are the easy bit, retaining the humanity of individuals who are dying is the hard bit A chance to position interventions in terms of being person-centred

17. ACP – Are patients/people/individuals in the driving seat?

18. The Liverpool Care Pathway What have we learned which should guide the future? Clinical issues Health system issues Societal issues Scottish Government

19. Checklists and structured documentation have a continuing role to play in reliably delivering good care in the last days and hours • Agree • Disagree 184 of 300

20. “Being at risk of dying” is a more useful term than “diagnosing dying” for many patients with non-malignant disease • Agree • Disagree 181 of 300

21. The Liverpool Care Pathway What have we learned which should guide the future? Clinical issues Health system issues Societal issues Scottish Government